Wednesday, July 4, 2012

Out of the Woodshed and Into the Light....

Yesterday Jillian and I traveled to the University of Michigan
for her final infusion of Yervoy. It was just the two of us this time, and I
always cherish that one on one mother/daughter time. It reminded me of all of
the road trips we took together when she was on a travel soccer team. I
remember one trip in particular where we traveled to Missouri. We stopped at a
Target on the way and purchased the Backstreet Boys CD, Black and White. To
this day, whenever I hear one of their songs, I’m taken back to the memory of
us belting out the songs as we are speeding down the highway. Fun times!

This road trip was different of course, but just as our
soccer days were a part of our lives in a big way, so are our trips to U of M.
This has become our way of life. Trips to the Dr for scans and/or appointments
every three weeks. It’s what we do, it’s how we schedule our time.

I was encouraged when Jillian mentioned that her vision was
improving. Jillian has been having blurred vision for about six weeks now. This
is related to the ventricles in her brain swelling due to the swelling of the
tumor. She has been on a higher dose of steroids, but has been decreasing them
each week. Or so I thought. We determined that there had been a mix up on the
dose last week, so where we thought she was down to 2mg once a day, she was still
taking 2mg twice a day. Since she didn’t see much difference a few weeks ago
when she was taking 4mg twice a day, we are still encouraged that the 2mg
additional each day wouldn’t make much difference. We just need to keep an eye
out for any changes in vision with the lower dose. Dr. Lao is encouraged at how
well Jillian is doing on the combined treatments of Yervoy and Zelboraf. She
still continues to have minimal side effects on these drugs. After our
appointment with him, we went down for her last infusion, left the hospital and
stopped for dinner before the drive home.

So now I’m home and my heart is full. I’ve been told that
there are two types of people. There are the coffee table people who lay
everything out on the table, and have to talk about their issues right away.
Then there are the woodshed people like me. These people find their woodshed,
and process things on their own. I was pulled this morning to my woodshed. But
today it was more than just processing the events of yesterday. I knew that God
had to talk to me, and I always find I hear Him best when I’m surrounded by the
beauty of the outdoors.

It’s terribly hot outside as I pull the weeds from my flower
garden. This is healthy for me as big silent tears fall to the ground. I’m
trying to figure out what I’m feeling, and I’m not rushing it. I’m just praying
and asking God what He wants from me. I think I understand now.

As I look back on yesterday, I cannot describe accurately
how it feels to see my daughter hooked up to the IV that will administer her
drugs. It’s surreal. I see all these people in this big room, doing the same
thing we are. They all have cancer, and they are all getting life saving drugs.
Some of them have loved ones sitting next to them, many of them don’t. But they
all have Hope. And THEY HAVE A FACE!

This brings me to the two things I think God was trying to
talk to me about. I wrote before that my friend Mary lost her precious
daughter Kristen to Leukemia at the age of 20. A big concern for Mary was that
people would forget Kristen, and who she was. She has worked hard to keep
Kristen’s memory alive, and to continue to honor her every chance she gets.

The other thing is a confession. About 5 years ago I was at
the Fifth Third Riverbank Run here in Grand Rapids. While I was there, I walked
past an old neighbor of mine. I hadn’t seen her for years, since I had moved out of the
neighborhood. I had heard she was battling cancer. I saw her with a colorful
bandana on her head, covering her baldness due to chemotherapy. It all happened
so fast as I was walking, but we made eye contact. She had a huge smile on her
face, but it took me a minute to register who it was. And. I. Kept.
Walking. I didn’t stop. I didn’t turn around. I just kept walking. She
passed away about a year later. I was too concerned with myself, and what I
would say to her. I was selfish and afraid. But now I’m ashamed because I will
never get the opportunity again to give her a hug. To tell her she looks as
beautiful as she always did, to tell her I would pray for her and her family.

So while many of you are enjoying your Fourth of July
festivities with family and friends, take a minute to reach out to someone that
you know is battling cancer. Acknowledge their fight. Remember that person who
has lost a loved one and doesn’t feel like celebrating the Fourth today. Try
and step out of that comfort zone and risk feeling uncomfortable. We are all
connected together in this world. Serve one another. Spread your love, and
bring Hope to someone who very well may need it.

Pray about it. I will.

Love,

Sue

Below are links to our warriors and a special hug to Kelly,
in memory of Casey who left us one year ago today.

Your gifts never cease to amaze me..Thank you Susan. Please never stop writing, and never stop believing. You are a Godsend.I wish we were sitting together in your beautiful space, sipping tea or coffee or wine....and talking and crying and laughing and hugging. We've never met in the physical sense, but I imagine sharing this time with you as if we were the dearest of friends.

Jilly's Jems A Non Profit Organization- Supporting Melanoma Awareness

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About Me

I'm Susan, Jillian's mom. Jillian was diagnosed in September, 2010 with Stage IV Melanoma. I've created this blog in an effort to help raise the awareness for melanoma, especially in young people. This is Jillian's Journey, A Mother's Story.